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End-of-life decisions are those you can make now about how you wish to be cared for and treated when you are dying. End-of-life decisions can include whether to accept or refuse treatments that might prolong your life. An advance directive is one way to let others know about your decisions based on your values and priorities. It’s important that those close to you fully understand what you want at this time , so it is as easy as possible for them to carry out your wishes. You can read more in End of Life Care .
A terminal condition or illness is one that is life-limiting. In the near future it is expected the illness will result in permanent unconsciousness from which the person is unlikely to recover or death. Examples of terminal conditions may include but are not limited to advanced cancers, multiple organ failure , or some massive heart attacks and strokes. Definitions of terminal illness can be different from state to state .
In most cases , life-sustaining medical treatment is any medical intervention, medication, or anything mechanical or artificial that sustains, restores that would prolong the dying process for a terminally ill patient. These may include but are not limited to:
Comfort measures, which are medicines or procedures used to provide comfort or ease pain, are not usually considered life-sustaining. In some states, tube feedings and IV fluids are considered comfort measures. States have different definitions, so be sure you know what your state says.
The best time to make an advance directive is before you need one. In other words, before you become too sick to make your own decisions about what medical care you want to get or refuse. See Making Decisions for Your Advance Directive.
If you have any type of advance directive, let your health care team know and make sure they have it in their records. You may also tell people close to you that you have it and where it’s kept. Give copies of your advance directive to your proxy or agent, family members, and friends who would be contacted if you become seriously ill.
Even though advance directives are legally recognized documents, there are times that a health care provider may reject a medical decision made by you or your health care proxy based on your advance directive. For example:
In such cases, the health care provider or facility must tell you right away. Your health care provider or institution may help you be transferred to another facility that will honor your decisions.
To avoid these situations, it may be beneficial for you to discuss your wishes and values with your health care provider ahead of time and document them. This will help make sure your health care team is clear about what you want and is willing to support your wishes. This will also help make sure that your wishes are within the institution’s health care standards.
Your advance directive is valid in an emergency room only if the health care providers there know about it. In serious emergency situations, it may not be possible for health care workers to know that you have an advance directive before emergency medical care is given. If you have specific wishes that you would like to be carried out in case you have an emergency, you may talk to your health care team about filling out a physician orders for life sustaining treatment ( POLST ) form .
If you don’t have an advance directive and become unable to make medical decisions by yourself, you could be given medical care that you would not have wanted. If there’s no advance directive, the doctor may ask your family about your treatment.
Some states have passed family agency acts that choose which family members (listed in order of priority) may act on behalf of a patient if you don’t have an advance directive. But some states do not have laws that require health care providers to check with family members. Family members (especially those who aren’t close to you) might not know what you would want. Family members might also disagree on certain aspects of your care, which may cause delays or lead to you not getting the care you might have wanted. Sometimes, the courts can appoint a surrogate or proxy. This is someone a judge chooses to make decisions for you if you become unable to make decisions for yourself.
A lawyer can be helpful, but most people don’t need one to write an advance directive. Some states have forms you must use, and all states have certain requirements. Talk to your health care team, as they may be able to help you write your advance directive. Sample forms and directives that meet your state’s requirements may also be available.
Most states have their own rules about what’s recognized as a valid advance directive. Some states recognize an out-of-state directive if it meets the legal requirements of the state in which you want to use it. If you want to use an advance directive in a state other than that in which you signed it, or if you want to have an advance directive in more than one state, it’s a good idea to check with a lawyer in order to avoid any problems.
No, having or not having an advance directive will not affect the quality of health care you receive while you can make your own medical decisions. Your health care team will only use you r advance directive to guide medical decisions when you are unable to make decisions for yourself. For a living will to be used, two physicians must confirm that you are unable to make medical decisions for yourself. They must also confirm that you are in a medical condition defined by your state law as a terminal illness or permanent unconsciousness .
Yes, you can have both a living will and a durable power of attorney for health care at the same time. A durable power of attorney is used when you are unable to make your health care decisions. In this case, the person you selected to be your health care agent (proxy) will make all of your health care decisions after your physician certifies that you can't make your own medical decisions. A living will is only use d after two physicians confirm that you are unable to make medical decisions for yourself, and that you are in a medical condition defined by your states law as terminal illness or permanent unconsciousness . If you have both these documents, it is important to make sure they don't conflict with each other so that there will be no confusion about your wishes if you can't speak for yourself.
Yes, you can change your mind at any time about what's written in your advance directive. You can also revoke it (take it back) at any time. It is recommended that you review your advance directive every so often to make sure your wishes are still the same. For example, if you have a major health change, a major family change like a divorce, if something happens to your health care proxy (agent) or they become unwilling to be your proxy, or if an existing health condition or illness gets worse. If you change or cancel your advance directive, be sure to let your health care team, loved ones, and your health care proxy (agent) know and also replace any advance directive copies you may have given them with the new one. This will help to ensure that there is no confusion if you are unable to make your own decisions.
It may be difficult to honor an advance directive in the event of an emergency while at home. EMS (Emergency Medical Service) teams are required to try to revive and prolong life in every way they can. Some states allow EMS teams to not resuscitate patients who may have valid DNR or POLST forms at home. If DNR or POLST forms are honored in your state, speak with your health care provider about getting these forms filled and signed to reflect your wishes in case of an emergency at home. Your health care provider may also be able to help you get a wallet card, bracelet, or other DNR documents to keep when you are at home or not in the hospital .
Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.
American Bar Association. Myths and facts about health care advance directives. 2018. Accessed at https://www.americanbar.org/groups/law_aging/publications/bifocal/vol_37/issue_1_october2015/myths_and_facts_advance_directives/ on February 26, 2019.
American Hospital Association (AHA). Put it in writing. 2012. Accessed at https://www.aha.org/system/files/2018-01/putitinwriting.pdf on February 19, 2019.
Cancer.net. Putting your health care wishes in writing. 2018. Accessed at https://www.cancer.net/navigating-cancer-care/advanced-cancer/putting-your-health-care-wishes-writing on February 19, 2019.
National Cancer Institute (NCI). End-of-life care for people who have cancer. 2012. Accessed at https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/care-fact-sheet on February 19, 2019.
National Hospice and Palliative Care Organization (NHPCO). Communicate your end-of-life wishes. Accessed at http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3527 on February 19, 2019.
National Institute on Aging (NIA). Advance care planning: Healthcare directives. 2018. Accessed at https://www.nia.nih.gov/health/advance-care-planning-healthcare-directives#what on February 26, 2019.
Last Revised: May 13, 2019
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