A Guide to Advance Health Care Directives

As your loved ones age, it’s natural to worry about making the right decisions during a medical emergency. You want to respect their wishes regarding medical treatment, but may not know exactly what those are. Additionally, you may be concerned if doctors would allow you to make decisions if they’re incapacitated. This is where Advance Health Care Directives (AHCD) come in.

AHCDs or living wills, outline an individual’s medical treatment preferences for use if they become unable to decide for themselves. In some places, they also include medical powers of attorney. Essentially, AHCDs safeguard any adult’s wishes during health emergencies or illnesses.

Despite their importance, only around one in three American adults have an advance care directive. The low numbers may be due to confusion about the process or misunderstanding the scope of the document. Creating an advanced health care directive can feel overwhelming, especially with other caregiving, work, and family responsibilities. However, without one, there could be problems if your loved one becomes incapacitated.

This guide aims to demystify AHCDs, empowering you to make informed decisions for your family. Below, we’ll explain the purpose, benefits, who they can help, and the process of crafting advance care directives.

Advance care planning is the process of preparing for a time when your aging loved one might not be able to make their own medical decisions. This process ensures that, should they become unable to speak for themselves or make their own decisions about treatments or interventions, their health care professionals and loved ones know what they want.

Simply put, advance care planning is all about planning ahead and determining your loved one’s wishes to ensure they receive the kind of care they want, even if they become incapacitated. It’s an essential part of medical care and a gift to your loved one and your family.

Advance Health Care Directives (AHCDs) are legal instructions ensuring a person gets the desired medical care if they can’t decide for themselves. They serve as guides for medical professionals and help you make decisions for your aging parent’s care.

AHCDs can refer to various documents, including living wills, medical power of attorney, and organ donation instructions. Depending on local and state laws, these may be consolidated into one directive or require multiple documents. 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.

An advance health care directive goes into effect when a person is incapacitated, for example in a coma, in the late stages of dementia, or near the end of life, 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.

Firstly, AHCDs specify your loved one’s desired and undesired health treatments, such as their preferences on life-saving measures and for nourishment including CPR, intubation, or tube feeding. Your parents may have different sets of instructions that may be included for general medical care versus end-of-life scenarios.

Secondly, AHCDs appoint a medical proxy to make decisions on the patient’s behalf if they’re incapacitated. This proxy ensures the patient’s wishes are carried out and makes the decisions during unexpected situations.

Depending on state jurisdictions, these protections may be in one document or split into two; the latter is often called a 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 outlines your parent’s preferences in various medical situations, often through a checklist of common treatments. It should provide precise instructions on handling their healthcare, especially regarding life-sustaining treatments in terminal or irreversible conditions.

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.

AHCDs and Medical Powers of Attorney (MPOAs) take effect only when your parent is incapacitated. Until then, doctors follow their current decisions. If incapacitated, the AHCD guides medical decisions, overriding even a proxy’s opinions and decisions. The law on this varies by state, which emphasizes the need for a proxy who understands and respects your parent’s wishes.

Writing an advance directive is a proactive step in managing your parents’ health care and ensuring their wishes are respected and carried out. Below are the top reasons why you should write an advance directive:

• Autonomy: It allows your loved one to maintain control over their health care decisions, even if they cannot communicate or make decisions for themselves later in life.
• Clarity: It provides clear instructions about your parent’s health care preferences to your doctors and caregivers, minimizing ambiguity during moments of crisis.
• Reduced Burden: As mentioned, an advance care directive is a gift to family and loved ones. It alleviates the burden on your family members and loved ones, and they will be spared from making tough decisions without knowing your loved one’s preferences.
• Preventing Conflicts: It helps prevent potential conflicts or disagreements among family members about the right course of action regarding medical care.
• Peace of Mind: Your loved ones will have peace of mind knowing that their preferences and wishes will be respected.

Contrary to popular belief, an advanced care plan (ACP) will benefit all adults at any age, regardless of their current health status. After all, unexpected medical situations can occur at any time. However, it is particularly important for certain groups of people:

• Older adults: As we age, we’re more likely to be inflicted with serious health issues. An ACP provides clear instructions for situations (e.g., injuries, illnesses, post-treatment, etc.) where older adults might be unable to make decisions for themselves.
• People with severe or chronic illnesses: For those with conditions like heart disease, cancer, Alzheimer’s, diabetes, or kidney disease, an ACP can help guide treatment decisions and ensure their wishes are respected.

• People undergoing high-risk procedures: If you are about to undergo a major surgery or a procedure that might temporarily impair your decision-making abilities, an ACP can ensure your wishes are fulfilled.
• People with strong feelings about certain treatments: If you have specific feelings about treatments such as resuscitation, ventilation, or tube feeding, an ACP can ensure your preferences are met.

Choosing an agent for end-of-life decisions requires careful thought. Though often first considered, family members may struggle with being objective or don’t want the responsibility of withholding life-sustaining treatments, so they’re not always the ideal choice.

Despite the difficulties in choosing an agent, it’s important to have one. Without an AHCD, healthcare providers default to family members for decision-making if your parent is hospitalized, which may not ensure their exact wishes are honored. Furthermore, some states mandate the decision-making be made by a majority of family members. This could lead to potential conflicts if disagreements arise.

Below are some tips on how to choose an agent.

The first step in choosing an agent is understanding your state’s rules about eligible appointees. The person you name may be a spouse, other family member, friend, or member of a faith community. Typically, doctors can’t be proxies due to potential conflicts of interest. Also, your agent should be an adult and 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, but it also gives your parents peace of mind.
• Assertive: The agent should be capable of advocating for your parent’s wishes to healthcare providers and family members.
• Physically present: Ideally, the agent should live near your parents or can easily travel there for detailed discussions with their doctors and healthcare providers and prompt decision-making.
• Objective: The agent should be able to set aside personal feelings to honor your parent’s wishes.

Once your parent identifies their desired agent, initiate a conversation with this person. While your parents may see them as a perfect fit, they may not be on-board to accept such a major responsibility. Multiple discussions might be needed to reach an agreement and ensure the agent fully understands the scope of their role and your parent’s wishes.

Choose only one agent to avoid conflicts. However, your parent may consider naming an alternate or successor to assume the decision-making ability if the primary agent passes away or is incapacitated.

End-of-life conversations with loved ones can be challenging. The prospect of declining health or imagining life without them might be tough for both your parents and you. 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 only some people are going to be ready to talk. It may also take a few conversations to cover all the relevant topics.
• Emphasize the Positive: While such conversations may be tough and even contentious, they can simplify future decision-making. Remind everyone that early planning can ease future tension and minimize conflicts once your parents can no longer make decisions on their own.

• 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 cases, a neutral party like an attorney, faith leader, or family counselor can help navigate these discussions, ensuring your parent’s wishes are respected. This can be especially important if there is conflict in your family.

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.

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

Next, initiate a conversation with your elderly parents to discuss their wishes and needs. This lengthy process could involve multiple discussions to determine what they want to include in their AHCD.

Involve key individuals in the discussion, such as a spouse, all siblings, and a trusted person in your community like a faith leader. 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

Advance care planning involves many considerations, including treatment preferences, agent selection, and envisioning end-of-life scenarios. While decisions shouldn’t be indefinitely delayed, give your parents enough time to reflect on their AHCD. This can increase their satisfaction with their directives and reduce future stress.

Remind them they can consult with others regarding these decisions. Suggest that they talk with their doctors, counselors, friends, or faith leaders to clarify their wishes. If your parent has a chronic condition, talking to their specialist can provide insight into likely future treatments and the prognosis of their illness.

Talk to Their Agent and Family

The next step 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 parents can make all their wishes known. This can help reduce disagreements in case the directive takes effect.

Write Down a Plan

This is where you document your parent’s wishes. Many states have templates that streamline this step 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 office, make sure to follow your state’s regulations. This might involve having a non-related witness during the signing or getting the document notarized. If a medical POA is needed, additional rules may apply. Once again, Area Agencies on Aging often provide elder law resources to assist with this step.

Give the AHCD to the Relevant People

Ensure copies of your parent’s AHCD are distributed to all involved in their care—doctors, hospitals, hospices, nursing homes, palliative care teams, family members, and their attorneys. Additionally, you could provide them with a card for their wallet, which will help alert healthcare workers to their AHCD if they’re hospitalized alone.

Additional paperwork like Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders, typically completed at the hospital, may be necessary to respect your parent’s wishes. As such, these should be communicated to the healthcare team upon each admission.

Some states utilize Physician Orders for Life-Sustaining Treatment (POLST) forms for detailed medical care instructions for seriously ill patients, and are signed by a healthcare team member. This form does not replace your other directives. Instead, it serves as doctor-ordered instructions to ensure that, in case of an emergency, you receive the treatment you prefer. Your doctor will fill out the form based on the contents of your advance directives, the discussions you have with your doctor about the likely course of your illness, and your treatment preferences. For conditions like cancer, your parents may consider a POLST.

Update as Needed

Over time, your loved one’s wishes may change due to aging or changes in health status, so the document may need to be updated. Updates are also required if the agent moves away or can no longer act as a medical proxy.

Fortunately, AHCDs can be revised as needed. As such, reviewing the document regularly to ensure it reflects current wishes is advisable. You should also revisit the document following major life or health changes, surgeries, or significant diagnoses.

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 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

Top Cities for Assisted Living

• Assisted Living in Port Arthur, TX
• Assisted Living in Las Vegas, NV
• Assisted Living in Suffolk County, NY
• Assisted Living in Monmouth County, NJ
• Assisted Living in Pittsfield, MA
• Assisted Living in Tucson, AZ
• Assisted Living in Atlanta, GA
• Assisted Living in Albuquerque, NM
• Assisted Living in Harrisburg, PA
• Assisted Living in Fresno, CA
• Assisted Living in Des Moines, IA
• Assisted Living in Lake County, IN
• Assisted Living in Canton, OH
• Assisted Living in Westchester County, NY
• Assisted Living in Eugene, OR

Top Cities for Memory Care

• Memory Care in Marin County, CA
• Memory Care in Saint Louis, MO
• Memory Care in Dallas, TX
• Memory Care in Chicago, IL
• Memory Care in Fredericksburg, VA