QUICK FACTS ABOUT ADVANCE DIRECTIVES

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1 QUICK FACTS ABOUT ADVANCE DIRECTIVES By Emily Slome August

2 TABLE OF CONTENTS What is an Advance Directive?...3 Why Everyone Should Have an Advance Directive 4 What Occurs if You Do Not Have an Advance Directive?...5 When to Complete an Advance Directive 6 What is a Living Will?...7 What is a Durable Power Of Attorney?...8 What Should You Consider When Choosing a Proxy?...9 Using Both a Living Will and a Durable Power Of Attorney..10 What are Your Goals and Desires?...10 Options You May Want to Consider...11 Controversial Options...12 State Differences in Advance Directive Laws and Forms 13 Controversial Issues Surrounding Advance Directives and End-of-Life Care..14 How to Effectively Document Your Decisions and Increase the Likelihood of Those Decisions Being Implemented.16 Can a Healthcare Provider Refuse to Carry Out the Wishes You State in Your Advance Directive?...18 How to Get an Advance Directive Form 19 Where to Find More Information on Completing an Advance Directive

3 General Note: The Center has an Advance Directive Steward with a detailed decision-making matrix, definitions, and appendices of state laws and links to advance directive forms. If you decide you want to write an advance directive, please visit our Advance Directive Steward at What is an Advance Directive? An advance directive is a legal document that allows you to communicate your healthcare decisions and wishes to loved ones and healthcare personnel in the event that you become unable to make or dictate those decisions yourself. For example, you may be unconscious or in a coma. (American Medical Association at also see the Center s Advance Directive Steward definitions page, Advance directives can apply to any healthcare decisions but are most commonly associated with life-sustaining treatment and end-of-life care. (American Medical Association at Your advance directive can include general instructions about the medical care you would like to receive or it can be more detailed and outline specific types of care or treatment you would accept or refuse in certain situations. For example, you may refuse resuscitation in the event that your heart stops. (American Hospital Association at There are two main types of advance directives: a living will, which is a written document in which you outline specific instructions about your healthcare decisions and a durable power of attorney, which is a legal document in which you name a proxy or, in other words, another person who you authorize to speak for you and make decisions about your medical care. (See below for more detail). (American Hospital Association at 3

4 Why Everyone Should Have an Advance Directive An advance directive relieves both your loved ones and your healthcare team of the stress and uncertainty of having to guess what you would want. (MedlinePlus at Having an advance directive empowers loved ones and/or the person you appoint as proxy (see below) to act with authority in getting your wishes implemented. This is particularly important if there is disagreement among those interested in your care as to what would be best for you. (National Hospice and Palliative Care Organization at An advance directive eliminates the feelings of guilt loved ones often feel when they have to make decisions without knowing what you would want. (National Hospice and Palliative Care Organization at An advance directive helps you communicate your healthcare wishes and goals clearly to both loved ones and healthcare personnel. (National Hospice and Palliative Care Organization at Having an advance directive allows you to have more control over your medical care. (American Hospital Association at An advance directive helps doctors understand the goals of your care. (American Hospital Association at A durable power of attorney document allows the person you choose as your proxy to speak with authority about your medical care. (American Hospital Association at 4

5 What Occurs if You Do Not Have an Advance Directive? In most states, laws exist that create a list of proxies who medical professionals are supposed to rely on to make decisions for you, usually starting with your spouse, parent, or oldest child. (National Hospice and Palliative Care Organization at also see the Center s Advance Directive Steward Appendix A for the rules in your state, The two most common principles or standards that are followed in the event that you do not have an advance directive or family members do not know what you would want are the substituted judgment and best interest standards. (National Center for Biotechnology Information at also see the Center s Advance Directive Steward Part I Section B, The substituted judgment standard means that whoever is making decisions for you needs to think about what you would have wanted and substitute that judgment for their own sense of what is best. This standard often causes confusion because of its name. It does not allow your proxy to substitute his or her own judgment for yours. It requires the opposite. Your proxy must determine what you would want based on what your proxy knows about your views, life-style, religion, etc. (National Center for Biotechnology Information at also see the Center s Advance Directive Steward Part I Section B, If there is no one that knows you well enough to apply the substituted judgment standard, then a best interest standard is applied. This is the standard most healthcare professionals apply automatically unless a loved one steps in and explains to them that you would want something different. The problem with this standard is that we live in a multi-cultural society where for some types of healthcare decisions (particularly end-of-life decisions) there is considerable disagreement 5

6 about what constitutes a person s best interest. (National Center for Biotechnology Information at also see the Center s Advance Directive Steward Part I Section B, In the event that there is no one to appoint as your surrogate, decisions may be deferred to your attending physician, or an ethics committee may be consulted. (American Bar Association at also see the Center s Advance Directive Steward Appendix A, Overall, without an advance directive, there may be confusion and delay in making treatment decisions. If there are disagreements about what care you would have wanted or what care is in your best interest, your case could end up in court A costly and stressful situation for your loved ones. (American Hospital Association at When to Complete an Advance Directive An advance directive is ideally completed when you are healthy. Of particular importance is the appointment of a proxy. (National Hospice and Palliative Care Organization at Completing an advance directive early on will allow you time to fully think through your healthcare wishes and inform and discuss your wishes with loved ones (National Hospice and Palliative Care Organization at Consider your options fully by working through the Center s Advance Directive Steward s decision making matrix. ( You can make changes to or revoke your advance directive at any time as long as you are competent to do so. (National Hospice and Palliative Care Organization at 6

7 What is a Living Will? A living will is a written document in which you outline the type and extent of medical care and treatment you would like to receive in the event that you are no longer able to make or dictate those decisions. (American Hospital Association at The aim of a living will is to describe the specific kinds of lifesustaining medical treatments you would like to receive or refuse under specific medical circumstances. (American Hospital Association at also see the Center s Advance Directive Steward Part III, For example, you might make the general request to refuse any lifesustaining treatment that serves only to delay your death in the event that your physician determines your condition is incurable. However, you might also make a more specific request to not be put on a respirator in the event that you are unable to breathe on your own. On the other hand, an advance directive can also be used to make clear that you would want everything done to extend your life if that is what you wish. (National Hospice and Palliative Care Organization at also see the Center s Advance Directive Steward, Some advantages to having a living will are that your decisions are clearly documented on paper and you can avoid putting a loved one in the difficult position of making important medical decisions for you. (American Hospital Association at A potential disadvantage of having a living will is that circumstances may arise that you did not anticipate when you wrote your living will. Under such circumstances, your living will may not be effective in helping healthcare personnel determine your care. This is why it is important to also appoint a proxy who knows you well enough to make an informed judgment as to what you would want if a situation 7

8 comes up that is not specifically covered by your living will. (American Hospital Association at also see the Center s Advance Directive Steward Part III, It is important to note that states have varying laws about when a living will is effective, what kinds of treatments you can request or refuse, and what kind of formalities are required for documenting your living will (for example, whether it must be notarized). (See the Center s Advance Directive Steward Appendix B, What is a Durable Power Of Attorney? A durable power of attorney is a document in which you name a person to speak on your behalf and make healthcare decisions for you in the event that you are no longer able to make or dictate those decisions yourself. This person is called your proxy. (National Hospice and Palliative Care Organization at also see the Center s Advance Directive Steward definitions page and Part III, If you are deemed unable to make or voice your own healthcare decisions your durable power authorizes a proxy to make medical decisions for you with the exception of any limits set by you in your durable power or living will documents. Note state laws also limit what types of decisions your proxy can make. (See the Center s Advance Directive Steward Appendix A, The major advantage of having a durable power of attorney is that your proxy is authorized to make decisions on your behalf in a broad range of circumstances and is therefore able to make medical decisions for you even if unforeseen circumstances arise. (American Hospital Association at 8

9 If a situation arises where your proxy does not know how you would want him or her to decide (substituted judgment), your proxy is expected to decide based on what is in your best interest. (American Bar Association at As with living wills, states have varying laws about durable power of attorney documents. State laws vary regarding who can qualify to be a proxy and what kind of medical decisions your proxy can make for you. For example, some states specify who may act as a witness to the signing of your power of attorney document. (See the Center s Advance Directive Steward Appendix B, What Should You Consider When Choosing a Proxy? Your proxy should be someone who knows you very well. Your proxy should be someone you trust will make decisions for you that reflect your wishes and values even when those decisions may be difficult to make or different from what the proxy would want for him or herself. (National Hospice and Palliative Care Organization at It is important that your proxy is someone who understands your moral and religious values, your views regarding life and death, your general attitudes towards medical care, and your preferences regarding specific circumstances and healthcare procedures. (National Hospice and Palliative Care Organization at See the Center s Advance Directive Steward for options to consider and state limitations on what is allowed. ( You should discuss these things with your proxy early on and make sure he or she fully understands your wishes and values and is willing to act on your behalf should you become incapacitated. It can also be helpful to put these things in writing for your proxy, in other words, 9

10 have a living will as well as a durable power document. (National Hospice and Palliative Care Organization at Using Both a Living Will and a Durable Power Of Attorney In most cases having both a living will and durable power document is the best option. (American Hospital Association at Having both a living will and a durable power of attorney is a way to cover all your bases. The durable power of attorney appoints someone who can actively advocate for the care that you want. He or she can make sure healthcare providers are aware of your wishes and follow them. A living will can reinforce your proxy s authority by describing any controversial preferences you may have or choices that you anticipate might be challenged by others (for example, there might be members of your family or healthcare professionals who you anticipate may disagree with your preference on cultural or religious grounds). (National Hospice and Palliative Care Organization at It is important that these documents are consistent with each other so there is no confusion about what your healthcare wishes are. (American Medical Association at The proxy that you name in your durable power of attorney should have a copy of both the durable power and your living will if you have one. (American Medical Association at What are Your Goals and Desires? The following are some examples of issues you might want to consider: pain relief, prolonging life, improvement in function, quality of life, dignity, bodily integrity, and spiritual/religious desires. (American Hospital Association at 10

11 For more information about goals you may want to consider when completing an advance directive, see the Center s Advance Directive Steward Part I: Patient Goals ( Options You May Want to Consider With an advance directive, you can request or refuse treatments as long as the request is legal and medically feasible. (American Bar Association at also see the Center s Advance Directive Steward, The following are some options you might want to consider including in your advance directive and/or discussing with your proxy: Life sustaining treatments are any treatments that replace or support a bodily function. (American Hospital Association at also see the Center s Advance Directive Steward Part II, A DNR is a medical order that instructs healthcare staff not to resuscitate you in the event that your heart stops beating or you stop breathing. (American Hospital Association at also see the Center s Advance Directive Steward Part II Section D, An anatomical gift is a donation of all or part of your body, after death, for the purpose of research, education or transplantation. (MedlinePlus at, also see the Center s Advance Directive Steward Part II Section B, Experimental treatments are forms of treatment not generally accepted by the medical community, usually because they need more testing to assure safety and/or effectiveness. (American Medical Association at 11

12 also see the Center s Advance Directive Steward Part II Section C, Hospice care is end-of-life care that focuses on providing you with comfort and peace of mind by giving medical, psychological, and spiritual support. Hospice usually provides palliative rather than curative care (see next entry). (American Hospital Association at also see the Center s Advance Directive Steward Part II Section A, Palliative care focuses on relieving symptoms such as pain and discomfort. Palliative care can involve curative measures but cure is never the goal of palliative care. (American Hospital Association at also see the Center s Advance Directive Steward Part II Section A, For more information about options you should know about when completing an advance directive, see the Center s Advance Directive Steward Part II: Understanding Options ( Controversial Options Passive euthanasia is the act of stopping life sustaining treatments and allowing a natural death to occur. Some, but not all, types of passive euthanasia are allowed in all U.S. states. (National Hospice and Palliative Care Organization at also see the Center s Advance Directive Steward Part II Section I, Active Euthanasia is currently illegal in the United States. Active euthanasia is the process in which someone other than you takes active measures to end your life with the purpose of ending suffering due to illness. (American Medical Association at 12

13 also see the Center s Advance Directive Steward Part II Section I, Terminal sedation is the use of sedatives to render you unconscious until natural death occurs from your illness. (National Hospice and Palliative Care Organization at also see the Center s Advance Directive Steward Part II Section G, Physician aid-in-dying refers to a physician providing you with the means to take your own life, such as writing a prescription for a deadly dose of a drug. It is currently only legal in a few states. Note: physician aid-in-dying is only available to competent patients so it can NEVER be requested through an advance directive. (National Hospice and Palliative Care Organization at also see the Center s Advance Directive Steward Part II Section H, State Differences in Advance Directive Laws and Forms All states currently recognize your right to prepare an advance directive. However, advance directive laws vary greatly from state to state. It is important to be familiar with and follow the laws in your state when completing your advance directive. (See the Center s Advance Directive Steward Part IV, Many states impose limitations on who can act as your proxy and what decisions your proxy is allowed to make. (See the Center s Advance Directive Steward Appendix A and B, Some states have specific requirements for how an advance directive should be structured. Many have advance directive forms you can (or 13

14 should) use. (See the Center s Advance Directive Steward Appendix B, An advance directive signed in one state may not always be accepted in another state. (See the Center s Advance Directive Steward Appendix B, For state specific advance directive forms, requirements, and information, see the Center s Advance Directive Steward Appendix B: Advance Directives ( Controversial Issues Surrounding Advance Directives and End-of-Life Care There are several issues surrounding advance directives and end-oflife care that are currently controversial from an ethical and/or legal perspective. (American Medical Association at In the event that you are unconscious or cannot swallow, there are medical treatments that may be used to administer nutrition and hydration. While the American Medical Association does not distinguish between nutrition and hydration and other life-sustaining treatments that may be refused, some people have argued that nutrition and hydration are morally unique forms of life sustaining treatment that should not be denied at the end of life. You will need to be very careful in how you word your advance directive if you think you might want to refuse nutrition and hydration. See limitations that some states place on the right to refuse such treatment through an advance directive. (See the Center s Advance Directive Steward Appendix F, Euthanasia refers to any action or omission that causes death with the purpose of ending suffering due to illness. Active euthanasia, which is currently illegal in the United States refers to someone other than you taking active measures to end your life (e.g., giving you a deadly dose 14

15 of a drug). Passive euthanasia refers to stopping life-sustaining treatments, for example when you or your proxy request a DNR, that is, request that medical staff not perform resuscitation efforts if your heart stops, OR the stopping of medically supplied life support such as a respirator (the stopping of mechanically supplied nutrition and hydration is controversial). Passive euthanasia is legal throughout the United States as long as you (the patient) make the treatment refusal in an advance directive or your proxy makes the decision for you in accordance with what he or she knows of your wishes or argues is in your best interest. (American Medical Association at also see the Center s Advance Directive Steward Appendix M, Physician aid-in-dying is defined as a physician providing you with the means to take your own life (for example, by writing a prescription for a deadly dose of a drug that you then have the option of taking yourself if you so choose). Note: The patient must take the medication him or herself. The physician never administers the drug that would be active euthanasia and is illegal in all U.S. states. Physician aid-in-dying is currently legal in only a few states and there are many requirements that need to be met before a person can get such assistance. Even in states where aid in dying is legal, doctors may refuse to prescribe the necessary medications for medical or personal reasons. Note: physician aid-in-dying is only available to competent patients so it can NEVER be requested through an advance directive. (American Medical Association at also see the Center s Advance Directive Steward Appendix M, There are two types of futile treatment: medical futility and subjective futility or futility from a quality of life perspective. In the strictest sense medically futile treatment is treatment that does not achieve its immediate intended goal. For example, it would be medically futile to administer CPR if there is no chance that the patient s heart can be restarted. BUT it is wrong to call it medically futile to apply CPR if the patient s heart can be restarted but it is unlikely that the patient 15

16 will ever regain consciousness. The second form of futility is not medically futile but might be considered futile from a subjective or quality of life perspective. There is no legal obligation for medical personnel to ever apply clearly medically futile treatment. But, on the other hand, decisions about the futility of continuing care from a subjective or quality of life perspective legally are decisions reserved for the patient or the patient s proxy. So the ethical, and in some cases legal, debate is over which forms of treatment fall into which category of futility. (American Medical Association at also see the Center s Advance Directive Steward Appendix D, Terminal sedation is the use of sedatives to render someone unconscious until death occurs from the underlying illness. It is most often used to relieve difficult to control pain and/or the mental anguish and suffering that may occur as a result of a terminal illness. Some of the ethical concerns surrounding terminal sedation are that it might be used as a form of active euthanasia, have unknown side effects, or that it might be used as a way to circumvent rules against the denial of nutrition and hydration. (National Hospice and Palliative Care Organization at also see the Center s Advance Directive Steward Appendix L, How to Effectively Document Your Decisions and Increase the Likelihood of Those Decisions Being Implemented One of the most important steps to remember when completing your advance directive is to familiarize yourself with your rights and the advance directive laws in your state. (National Hospice and Palliative Care Organization at also see the Center s Advance Directive Steward appendices, You do not need an attorney to write an advance directive. As a matter of fact, in some circumstances it may be a mistake to have an attorney 16

17 draft your advance directive. Attorneys tend to focus on making an advance directive hold up in court when the real focus needs to be on making an advance directive easy for healthcare professionals to understand and follow so your case does not end up in court at all. It is preferable to use your hospital s own form or your state s form so your healthcare team knows where to find relevant information quickly. This is far more important than having something written up in legalese on official looking parchment. (See the Center s Advance Directive Steward Part III, Inform your doctor and loved ones of your advance directive and discuss your healthcare wishes with them. (National Hospice and Palliative Care Organization at Be as specific as you can when writing your advance directive. And/or explain to your proxy about the kinds of treatments you would want under various circumstances. (American Hospital Association at If you are using a durable power of attorney make sure the proxy you choose is someone you can trust and who knows you well. (American Hospital Association at Once your advance directive is completed keep copies of the documents in a safe and easily accessible place. You should also give copies to your proxy, loved ones and doctor. Also give one to your local hospital if they are willing to include such a document in your patient files. (American Hospital Association at Keep a card in your wallet that says you have an advance directive. (Medicare at Make sure to review your advance directive each year and make changes if necessary. If you make changes then everyone who 17

18 received earlier copies needs to be given the updated version. (Medicare at Remind your proxy and loved ones about the important responsibility of making sure your advance directive gets implemented when the time comes. (Medicare at Discuss any changes in your treatment preferences with your proxy and loved ones. (Medicare at For more information on effectively documenting decisions, see the Center s Advance Directive Steward Part III: Documenting Decisions So They Count, Can a Healthcare Provider Refuse to Carry Out the Wishes You State in Your Advance Directive? There are a few circumstances when a healthcare provider is legally permitted to refuse to carry out the preferences listed in your advance directive or decisions made by your proxy. Some of those circumstances are discussed below. (American Hospital Association at also see the Center s Advance Directive Steward Part III Section E, Healthcare providers have a legal obligation to refuse to follow patient or proxy wishes that require illegal actions. Make sure you know what can be legally requested in your state. (See the Center s Advance Directive Steward Part III Section E, Healthcare professionals cannot be expected to go against the policies of the healthcare institution where they work even if what you request is legal in your state. Under such circumstances, the institution has an obligation to help arrange your transfer to another institution that will comply with your wishes. (National Hospice and Palliative Care 18

19 Organization at also see the Center s Advance Directive Steward Part III Section E, Some states allow healthcare providers to refuse to carry out even legal decisions if those choices go against the individual healthcare provider s ethical, religious, or cultural beliefs. But if a physician exercises the right to refuse, he or she has an ethical and usually also a legal obligation to help you find someone else who will follow your wishes at the same institution or at another institution if necessary. (National Hospice and Palliative Care Organization at also see the Center s Advance Directive Steward Part III Section E, How to Get an Advance Directive Form To get an advance directive form, start by checking with your local hospital. If your hospital uses a specific form, use that form. If your local hospital doesn t provide advance directive forms, then use your state s form if there is one. See the Center s Advance Directive Steward Appendix B for form options available in your state, Do not use a form that claims to be valid in all states. Such a form cannot exist because of contradictory requirements in different states. It is best to use the form easily recognized as valid by healthcare professionals who will be asked to implement your wishes. That is why it is best to use your local hospital s form or the form for the state where you live. See the Center s Advance Directive Steward Appendix B for form options available in your state, 19

20 Where to Find More Information on Completing an Advance Directive For more information on completing an advance directive and stepby-step instructions, go to the Center s Advance Direct Steward ( 20

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