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Quick Guide to Advance Health Care Directives

In Triage Cancer's free Quick Guide to Advance Health Care Directives, you'll learn about living wills (i.e., health care instructions), powers of attorney for health care (e.g., proxy, surrogate, or agent), and what to do if you change your mind and want to pick a new health care proxy.

There may come a time when you are unable to make your own medical decisions. Although it can be difficult to think about your mortality, completing an advance health care directive (AHCD) allows you to express your deeply held values and personal preferences. Thinking about these decisions and preparing in advance can provide you with the peace of mind that your loved ones will know your wishes. Every adult should have an advance health care directive, not just if they are dealing with a serious medical condition. AHCD have two main parts: health care instructions and a power of attorney for health care.

What Are Health Care Instructions?

You can provide written instructions, or state your preferences, about your medical care in case you become unable to communicate your wishes. While each state’s forms are slightly different, you can typically describe medical care that you would or would not want to receive in certain situations. For example, you can describe your preferences about: how you would like any pain to be managed; if you would like to receive life-prolonging measures such as artificial food or hydration; if you would want to be resuscitated if your heart stops; if you would like to donate your organs; or if you would like to donate your body to scientific research. Sometimes you will indicate these preferences by checking a box rather than writing anything out.

These instructions are sometimes called a living will. These instructions guide your health care team and caregivers in your medical care. It can also help caregivers avoid the burden of not knowing your wishes, or feelings of guilt for making a particular choice. It can also help to avoid disagreement over your medical care. For example, having an advance directive can be helpful if your spouse and adult children would disagree over your medical care. Not all states recognize standalone living wills as valid documents.

What is a Power of Attorney for Health Care?

In addition to providing written health care instructions, you can also choose another person (e.g., a proxy, surrogate, or agent) to make health care decisions for you, if you become unable to make health care decisions for yourself. This part of an advance health care directive is often referred to as power of attorney for health care or a health care proxy. The responsibilities of a health care proxy range from speaking to your doctors, to accessing and consulting your full medical records, to hiring and firing your health care providers, to making decisions about your tests, procedures, and treatments. In most states, your health care proxy will be able to make any decision that you could make yourself regarding your treatment.

Even in states that allow for this very broad health care proxy, you still have the ability to limit your proxy’s power and can include specific instructions or preferences about your health care that your proxy must follow. Other states have restricted the power of a health care proxy. For example, in New York, an agent cannot make decisions about artificial nutrition or hydration unless the individual’s wishes about artificial hydration or nutrition are specifically shared in the document or the individual has stated that the agent is aware of his or her wishes.

Can You Pick a Proxy and Have a Living Will?

In some states, you can use one or both options for advance health care directives. For example, you could name your best friend your health care proxy, but not include any specific instructions in a living will. Or, you could just include instructions in a living will, but not pick a proxy. Or, you can pick your spouse to be your proxy, but also include specific instructions about your medical care such as donating your body to scientific research. It is important that you use the right type of directive for your state.

Can Your Health Care Proxy Make Financial Decisions?

While a health care proxy can make medical decisions for you, they do not have the power to make financial decisions for you. If you would like to choose someone to make financial decisions for you if you are unable to make them for yourself, you should also complete a power of attorney for financial affairs. You can always choose the same person to fill both roles, but you do not have to.

How Do You Pick a Health Care Proxy?Two people sit together outside and have a conversation about advance health care directives and becoming a health care proxy

Choosing a health care proxy is a very important decision. You are trusting them with your medical care.

States have different rules on who can serve as your health care proxy. For example, in most states, you cannot pick a member of your health care team or someone under the age of 18 to be your health care proxy. However, most people choose someone they trust, such as a spouse, family member, or friend to be their health care proxy. Some people prefer not to pick a proxy because they don’t want to place that burden on an individual. Others rely on the idea that the person they trust will know your preferences and will make the right decisions. Here are some things to consider, to help you choose a health care proxy:

  • Should I pick a family member? You do not have to. You can choose anyone in your life whom you trust. That could be a spouse or sibling, or it could be your best friend. No matter who you choose, the proxy must understand and be willing to follow your wishes and preferences. This is why you should have an open and honest conversation with your health care proxy about your health care preferences. You should choose a person whose emotional connection to you would not get in the way of them honoring your wishes. For example, if you would choose to withdraw life support, would they be able to make that decision?
  • Will the person make decisions that are in line with my wishes? Ideally, you would want to choose a person who can best honor your wishes, even if they would choose differently for themselves. For example, they oppose blood transfusions, but would honor your wishes to have one if needed.
  • Will the person be able to make tough decisions in a crisis? The person may need to make hard decisions about your care, perhaps with little time to think. The person you choose should be able to make decisions under pressure.
  • Will the person be comfortable speaking up on your behalf? The person you choose as your health care proxy should feel comfortable: (1) asking hospitals, doctors, and other health care providers questions regarding your health; (2) clarifying anything they may not understand; and (3) communicating any wishes you may have regarding your care.

Do I Need to Give My Proxy Instructions?

You need to ask the person if she or he would be willing to take on this role. You should explain to them what this role entails, and answer any questions they may have to the best of your ability. Then you should share your preferences and choices for medical care so they understand what matters to you most. Having this conversation can be difficult. But it is very important that you clearly tell your health care proxy what types of treatment you do or don’t want in different situations. For example, would you want life support started, continued, or removed if you are in a coma? Would your answer change if it were extremely unlikely that you would ever wake up? What if your health care team said that your brain was not working? Would it matter if you had only been in a coma for three days, or three years?

It can also be helpful to share with any family members that you have chosen a proxy, who that person is, and your preferences and choices for medical care. This can help avoid confusion in a crisis and ensure that your family members are aware of your choices. Finally, it is important to allow the person you have asked to be your proxy the opportunity to decline. Not everyone is able to take on such an important responsibility.

What If I Change My Mind?

You can change your advance health care directive at any time. For example, if you chose your spouse to be your proxy, but are getting a divorce, you can pick a new proxy. You can also change any health care instructions that you have described in your AHCD. You need to fill out a new AHCD according to your state’s laws. You should review your AHCD every few years to make sure that it still reflects your wishes and works for you. For example, if you chose your mother, who lives in California, to be your proxy, but you have moved to New York, then it may make more sense to name your sister, who also lives in New York, as your agent.

Do I Need to Choose an Alternate Health Care Proxy?

There may be a situation where your health care proxy may not be available when health care decisions need to be made. For example, your proxy is out of the country and cannot be reached in a timely manner. To avoid this, you should choose an alternate or back up health care proxy. Be sure to list proxies in order of your preference. Never name two people to act as co-proxies because it could cause a problem if they disagree about your medical care. You should only have one person at a time serving as your health care proxy to avoid any conflicts.

For more information about planning ahead and other estate planning documents, visit TriageCancer.org/EstatePlanning & our Cancer Finances Estate Planning Module.

Disclaimer: This handout is intended to provide general information on the topics presented. It is provided with the understanding that Triage Cancer is not engaged in rendering any legal, medical, or professional services by its publication or distribution. Although this content was reviewed by a professional, it should not be used as a substitute for professional services. © Triage Cancer 2021

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