A Guide to Advance Health Care Directives
Last Updated: August 12, 2021
As your loved ones grow older, you may start thinking about what to do in a medical emergency. Most children want to ensure their parents’ wishes are respected when it comes to choosing medical treatment, but you may not know what those wishes are. You may also be worried about whether their doctors will let you make decisions if they’re incapacitated. This is where advance health care directives (AHCD) come in.
AHCDs detail a person’s preferences for medical treatment and are consulted if they can’t make those decisions themselves. A directive can also be referred to as a living will, and in some states, medical powers of attorney are also part of the AHCD umbrella. AHCDs can help any adult ensure their wishes are respected in case of illness or emergency.
Despite this, only around one in three American adults have an advance care directive. Although studies don’t show why so few people have AHCDs, it may be because the process for obtaining one can be confusing and often people don’t understand the scope of the document. It can certainly be overwhelming to research and create an advanced health care directive for a loved one, especially on top of other caregiving, work and family responsibilities. But, neglecting to set up an advanced directive can lead to problems should your loved one become incapacitated in the future.
We created this guide to help you better understand AHCDs so you can make an informed decision for yourself and your family. Below, we explain what advance care directives are, what they can do,who they can help, and how to create an AHCD.
Advance Health Care Directives: The Basics
Advance health care directives, or AHCDs, are legally enforceable, written instructions that help ensure a person receives the medical care they want if they can’t make decisions for themselves. If your aging parent has an AHCD, it can guide medical professionals as they plan treatments and help you make choices for their care.
AHCDs can refer to various documents, including a living will, medical power of attorney, and organ donation instructions. Depending on the laws where you live, the information can be combined into one directive, or your parent may need multiple documents to ensure that their wishes are followed. However, it’s most common for people to use the term “advance health care directive” when referring to a document that lists the medical treatments a person does or does not want.
Although AHCDs are legal documents, health care providers may reject the instructions included in the form without risking legal action. This should be rare and generally only occurs when:
- The instructions go against the health care provider’s conscience
- The instructions aren’t allowed according to the health care institution’s policies
- The instructions violate accepted health care standards.
In these cases, the provider or facility has an obligation to transfer your parent’s care to someone who will follow the instructions.
What Does an Advance Health Care Directive Do?
An advance health care directive goes into effect when a person is incapacitated and can no longer make their own decisions regarding medical care. When your parent can’t communicate their wishes, their AHCD helps ensure they get the care they would want in two ways.
The first way is by setting out the types of health care treatments they do and don’t want. This generally includes the measures that should be refused or taken to keep them alive, such as CPR, intubation and being given nutrition through feeding tubes. It can also include certain clauses. For example, your parent may have one set of instructions for general medical care and another set if a physician determines that their condition is terminal.
The second way an AHCD protects people is by naming someone to make decisions on their behalf if they’re unable to. This medical proxy makes sure the patient’s wishes are carried out and can also make decisions if there are no instructions for a particular situation that arises. In some states, the two types of protection are covered by a single document. In other parts of the country, two separate documents are required. The second document is generally called a medical power of attorney.
Advance Health Care Directives vs. Medical Power of Attorney
In some states, medical power of attorney (MPOA) is a type of advance health care directive or is included in the same documentation. In others, the AHCD only includes medical care instructions. This is also called a living will and is the definition used here.
An AHCD is a list of what your parent does and doesn’t want to happen in different medical scenarios. Some AHCD document templates use a checklist of common treatments that people can tick if they’re willing to have that treatment. The AHCD should have exact instructions on how to handle your parent’s health care, including information about continuing or withholding life-sustaining treatment if they have a terminal or irreversible condition.
A medical power of attorney (MPOA), on the other hand, gives someone else the power to make decisions about a patient’s health care. The person making the decisions is often called the medical proxy or agent. A medical proxy should make decisions in line with your parent’s wishes but is often needed in situations not covered by the AHCD.
Both AHCDs and MPOAs only come into effect when your parent is incapacitated. As long as they can make their own decisions, the doctor will be guided by what they say. Once incapacitated, the AHCD should be the primary guide for medical decisions. This means that if a medical proxy disagrees with what’s in the AHCD, the health care provider should follow the AHCD. In some states, this is clearly stated in the law; however, in other parts of the country, the law is less clear. This is why your parent should make sure their proxy knows what their wishes are and is willing to make sure those wishes are respected.
Choosing an Agent for End-of-Life Decisions
As part of their duties, an agent may make end-of-life decisions for your parent, so it’s important to think carefully about who to appoint. Family members may find it difficult to be objective, or may not want the responsibility of choosing to withhold life-sustaining treatments for a loved one, so they’re not always the best choice to become the agent.
Despite the difficulties in choosing an agent, it’s important to have one. If your parent is admitted to a hospital and they don’t have AHCDs, health care providers will look to family members to make decisions on their behalf. However, there’s no guarantee that these family members will understand their relative’s wishes. Additionally, some states require that decisions be made by a majority of the relevant family members, which can cause problems if there are disagreements. Below are some tips on how to choose an agent.
How Should Someone Choose an Agent?
The first step to choosing an agent is to understand the rules in your state about who can and cannot be named an agent. In most states, you can’t name your doctor as a medical proxy. Even if it’s allowed, it’s not a good idea because a conflict of interests could arise. Your agent must also be an adult and must be of sound mind. Agents should also have the following traits:
- Trustworthy. Make sure your parent chooses an agent they can trust. As an agent makes decisions on behalf of your parent, they need to know that the agent will follow their instructions. Not only is this important to ensure your parent’s wishes are respected, it also gives your parents peace of mind.
- Assertive. An agent needs to be able to stand up for your parent’s wishes with both health care providers and other family members. They should choose someone who is comfortable speaking up and willing to advocate on their behalf.
- Physically present. It’s best to choose an agent who is living in the same area as your parent or who can easily travel there. Being physically present at the health care facility makes it easier to have detailed conversations with health care providers and quickly make decisions as circumstances change.
- Objective. The agent needs to be able to put aside their own feelings to ensure that your parent’s wishes are carried out.
When your parent has decided who they wish to act as their agent, the next step is to speak to this person. Although your parent may think they’re perfect, their chosen agent may not want that responsibility. It may take a few conversations to come to an agreement and ensure the agent understands what they need to do and what your parent’s instructions are.
You should only choose one agent to avoid any disputes. However, your parent may wish to name an alternative or a successor. This ensures there’s still someone to make decisions if the first person passes away or is also incapacitated.
How to Discuss Advance Care Directives with Your Loved Ones
It can be difficult to have end-of-life conversations with your loved ones. Your parents may not wish to confront worsening health, and you may not wish to consider that they won’t be with you forever. These steps can help you have a productive discussion.
- Leave Plenty of Time: AHCDs must be created before your parent is incapacitated, so you should have the conversations early. You should also plan to have the conversations over time, as not everyone is going to be ready to talk. It may also take a few conversations to cover all the relevant topics.
- Emphasize the Positive: These conversations are difficult and may cause some conflict, but they do make things easier in the future. Remind everyone that making these decisions now will ease tension and help diminish conflicts when your aging parent no longer has the ability to make their own decisions.
- Have Everyone Make an AHCD: Rather than put all the attention on just one member of the family, take the opportunity to draw up an AHCD for everyone. This may make the conversation easier and also ensures that everyone has a directive ready in a worst-case scenario.
- Hire a Professional: In some situations, someone neutral can help keep conversations on track and ensure your elderly parent’s wishes are respected. An attorney, faith leader, or family counselor all make good mediators in these situations. This can be especially important if there is conflict in your family.
Examples of Conversation Starters
If you’re having difficulty beginning a discussion with your parent about advance care planning, consider trying these conversation starters:
- “Can I talk to you about my advance health care directive?” Starting a conversation about your advance care planning can give you the opportunity to ask about your parent’s plans.
- “Has your doctor ever talked to you about advance health care directives?” This can be a good option if you think your parent might need to be eased into a conversation. If they seem receptive, you can talk with them about their plans. If not, you can suggest they ask their doctor about directives and follow up at a later date.
- “I was reading about advance health care directives today …” Linking the conversation to an event is a way to casually bring up the topic. You can also mention a television show, sermon, or medical check-up. In some cases, it may even be appropriate to talk about AHCDs after a funeral or when someone your family knows has been in hospital.
- “I picked up this pamphlet from the doctor’s office today.” Doctors, hospitals and Area Agencies on Aging often have pamphlets or forms that detail how to start advance care planning. This can introduce the topic to your parent and help start a conversation.
- “Who do you want to make decisions for you in the future?” Some parents may respond best to a straightforward approach. If this is your parent, start your discussion with a direct question.
- “If this is too much to talk about right now, can you think about it so we can talk later?” Although this isn’t a conversation starter, it’s an important part of the conversation. Making sure your parent doesn’t feel pressured into the conversation can help them stay positive about the process and make decisions they’re comfortable with.
A Step-by-Step Guide to Establishing an Advance Care Directive
Follow these steps to ensure all bases are covered when you’re ready to help your parent establish an ACHD.
Understand What an Advance Care Directive Can and Cannot Do
Make sure you understand ACHDs as much as possible. This guide is a good starting point, but it’s important to get further information as rules can change between states. Area Agencies on Aging often have helplines that may be able to provide you with the right information. They can also refer you to other resources and may have elder law services available to answer questions for you.
Have a Conversation About Advance Care Planning
The next step is to bring the topic up with your elderly parent and discuss their wishes and needs. This may end up being the longest step, as some people will need to have multiple conversations about what planning is needed and what they want their AHCD to include.
It’s a good idea to include all relevant people in this conversation. This can include a spouse, all your parent’s children and a faith leader or another person who can support your parent. This ensures everyone is receiving the same information and any conflicts can be resolved straight away. However, be flexible. If you think a large group will increase stress, stick with one-on-one discussions.
Let Your Loved One Make Decisions
There’s a lot to think about when it comes to advance care planning. Your parent will need to decide what medical treatments they do and do not want to have, who their agent will be and what they want the end of their life to look like. Although you can’t let them put off decisions forever, make sure they have time to really consider what their AHCD should look like. This can ensure they’re happy with their directives and help remove stress going forward.
Remind them that they can discuss these decisions with other people. You may want to suggest they discuss their AHCD with a doctor, counselor, friend, or faith leader to help them clarify their wishes. If your parent has a chronic condition or illness, they may also want to speak to their specialist. A specialist can give them detailed information on what to expect as their condition progresses and also let them know which medical treatments are likely to be recommended if they’re admitted to a hospital due to that condition.
Talk to Their Agent and Family
The next step your parent needs to take is to talk to the person they’ve selected as their agent. They should make sure this person is willing to act as their medical proxy and discuss what the AHCD includes and what their wishes are. Next, the family should have another conversation so that your parent can make all their wishes known. This can help cut down on disagreements if the AHCD is ever used.
Write Down a Plan
This is where you document your parent’s wishes. Many states have templates that you can use to make this step easier and some states have specific forms that you must use. Most people don’t require a lawyer to write an AHCD, but if you’re appointing a medical power of attorney, you may wish to seek legal advice.
Follow the Rules of the State
To make the AHCD official, make sure you follow the rules of your state. You may need to have a witness when the AHCD is signed, and this can’t be a relative or someone named in the document. Other states require that AHCDs are notarized, and if you need a medical POA there may be other rules you need to follow. Again, Area Agencies on Aging often have elder law resources that can help with this step.
Give the AHCD to the Relevant People
A copy of your parent’s AHCD should go to everyone involved in their care. This includes their doctor, hospital, hospice, nursing home and palliative care team. Their family members and attorney should also get a copy. You can also get a card to put in their wallet or purse. These cards alert health care workers that your parent has an AHCD if they’re admitted to a hospital without family or friends present.
There may be other paperwork they need to file to ensure their wishes are met. Do not resuscitate (DNR) and do not intubate (DNI) orders often have to be completed at the hospital. If your parent wants these orders followed, mention it to their nurse or doctor when they’re admitted. This may need to be done each time they’re admitted. Some states also use physician orders for life-sustaining treatment (POLST) forms. These are designed to give specific orders about medical care for seriously ill and frail people and must be signed by a qualified member of the patient’s health care team. If your parent has an illness such as cancer, they may wish to think about having a POLST.
Update as Needed
Your parent’s wishes may change over time. This could be a consequence of getting older or may occur if they’re diagnosed with a terminal condition. The document may also need to be updated if their agent moves away or can no longer act as a medical proxy. Thankfully, AHCDs can be updated as required. You may want to suggest that they look at the directive regularly to ensure it still reflects their wishes. They should also revisit the document if they have a change of circumstances, are going into surgery, or receive a significant diagnosis.
If your parent does update their AHCD, make sure the new one complies with your state’s laws and a new copy is given to anyone who has a copy of their previous directive.
Advance Care Directive Frequently Asked Questions
Can I make medical decisions for my parents?
If your parent still has the capacity to make their own decisions, then they can make those decisions. An AHCD doesn’t come into effect unless they’re incapacitated, and it will stop being relevant if they’re no longer incapacitated, such as if they wake from a coma. If your parent is incapacitated, then the agent listed in their directive can make decisions on their behalf. This means that in most circumstances you can only make decisions for them if you’re their medical proxy.
When should you discuss an advance care directive?
You should discuss an advance care directive sooner rather than later. Remember, they’re not just for older adults; AHCDs can be useful for anyone in the case of an accident or illness. Your parent can only create one if they’re deemed mentally competent. If dementia is a concern, you should make sure any directives are established while your parent can still make decisions.
Who needs an advance directive?
An advance care directive is useful for any adult who has strong feelings about their medical care. Directives can be especially important for older adults and people with terminal conditions. A directive can ensure that their wishes are respected as they continue to age or their condition progresses.
What happens if you don’t have an advance directive?
If you don’t have an advance directive, someone else will make medical decisions on your behalf. In most states, this will be a member of your family. States generally have an order of priority to show which family member makes these decisions. In other states, the medical team can make decisions on your behalf and in some circumstances, the court may be asked to appoint a proxy. No matter who makes decisions for you, there’s a chance that without an AHCD they won’t know what your wishes are and you’ll receive a treatment that you don’t want.
Will my advance directive work in another state?
Most states do recognize out-of-state directives as long as they meet their own legal requirements. However, if you want a directive to be valid in more than one state, you should check with a lawyer to make sure there are no problems. This is essential if your parents are snowbirds or otherwise travel regularly and may need a valid directive in another state.
- “Advance Care Planning: Health Care Directives”. NIH National Institute on Aging, 15 January, 2018, https://www.nia.nih.gov/health/advance-care-planning-health-care-directives Accessed 19 July, 2021
- “Types of Advance Directives.” American Cancer Society, 13 May 2019. https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-financial-and-legal-matters/advance-directives/types-of-advance-health-care-directives.html Accessed 19 July, 2021
- Courtright, Katherine, “Prevalence of Advance Directives in the United States: A Systematic Review and Meta-analysis.” Palliative and Advanced Illness Research Center, Penn Medicine, 2017. https://pair.upenn.edu/projects/prevalence-of-advance-directives-in-the-united-states-a-systematic-review-and-meta-analysis Accessed 20 July, 2021
- “Finding Aging Resources in Your Area.” National Association of Area Agencies on Aging. https://www.n4a.org/ Accessed 20 July, 2021
- “Honoring the wishes of those with serious illness and frailty.” National POLST. https://polst.org/ Accessed 20 July, 2021
- “Advance Directive Forms.” AARP. https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/ Accessed 23 July, 2021
- “Understanding Health Care Decisions at the End of Life”. NIH National Institute on Aging, 17 May, 2017. https://www.nia.nih.gov/health/understanding-health-care-decisions-end-life Accessed 23 July, 2021
- “Advance Directives”. National Hospice and Palliative Care Organization. https://www.caringinfo.org/planning/advance-directives/ Accessed 23 July, 2021