Imagine a scenario where you’re in a hospital, unable to speak for yourself due to a sudden illness or accident. Decisions about your medical treatment need to be made, and your loved ones are faced with the daunting task of guessing what you would want. It’s a stressful situation, and surprisingly, studies show that people guess incorrectly about their loved ones’ end-of-life wishes nearly one-third of the time.
This highlights the critical importance of planning ahead for your healthcare. Having conversations about your wishes and creating a plan can significantly increase the likelihood of receiving the care you desire. Furthermore, research suggests that such planning can ease the burden of grief and reduce feelings of guilt and depression for your loved ones during difficult times. This planning often involves what is known as an advanced health care directive.
What is Advance Care Planning?
Advance care planning is a process of reflection and communication. It involves thinking about your values, preferences, and what’s important to you in terms of your health and medical treatment, especially if you were to become seriously ill or unable to communicate. The most vital aspect of advance care planning is having meaningful conversations with your family and loved ones about these wishes. In addition to these conversations, many people choose to formalize their preferences by creating legal documents called advance directives.
What are Advance Directives?
Advance directives are legal documents that serve as a roadmap for your medical care should you become unable to make or communicate your own decisions. These documents only come into effect if you lose the capacity to speak for yourself.
The two most common types of advance directives in healthcare are the living will and the durable power of attorney for health care.
Think of your advance directives as dynamic documents. It’s recommended to review them at least annually and update them whenever significant life events occur. These events could include retirement, moving to a different state, or any major changes in your health status.
Who Needs an Advance Care Plan?
Advance care planning isn’t something reserved for the elderly or those already facing serious illness. A medical crisis can strike at any age, potentially leaving anyone in a position where they cannot communicate their healthcare choices. Planning for your future healthcare now, by considering an advanced health care directive, is a proactive step to ensure you receive the medical care that aligns with your desires. It also ensures that a person you trust is authorized to make decisions on your behalf if needed.
What Happens if You Do Not Have an Advance Directive?
If you haven’t established an advance directive and become unable to make medical decisions, the laws of your state will determine who is authorized to make those decisions for you. Typically, this authority is given to your spouse, or if unavailable, to your parents, or adult children. However, if you are unmarried and haven’t legally named your partner as your healthcare proxy, they might be excluded from the decision-making process. In cases where there are no family members, some states may allow a close friend who is familiar with your values to participate. In other situations, a physician might be assigned to act in your best interest. To understand the specific laws in your state, you can contact your state legal aid office or state bar association.
Will an Advance Directive Guarantee Your Wishes Are Followed?
While an advance directive is a legally recognized document, it’s important to understand that it is not legally binding in every situation. Healthcare providers and your chosen healthcare proxy will make every effort to honor your advance directives. However, complex medical situations can arise where the best course of action according to your wishes might be unclear. This is why having thorough conversations about your preferences is so crucial. Open communication with your loved ones beforehand can equip them to better navigate unforeseen challenges.
There are instances where a healthcare provider might refuse to comply with your advance directives. This could occur if a decision conflicts with:
- The healthcare provider’s moral or religious beliefs (conscience)
- The policies of the healthcare institution
- Accepted healthcare standards of practice
In such situations, the healthcare provider is obligated to immediately inform your healthcare proxy and consider transferring your care to another provider who can honor your wishes.
Other Advance Care Planning Forms and Orders
Beyond the standard advance directives, you might consider preparing additional documents to express your preferences about specific medical issues or emergency situations not fully covered in your general directives. Discussing these with your doctor can lead to establishing specific medical orders, such as:
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Do Not Resuscitate (DNR) order: A DNR order becomes part of your medical record and informs medical staff in a hospital or nursing facility that you do not wish to receive cardiopulmonary resuscitation (CPR) or other life-support measures if your heart stops beating or you stop breathing. This order is sometimes referred to as a “do not attempt resuscitation” (DNAR) order or an “allow natural death” (AND) order. Even if your living will expresses your wish to forgo CPR, having a DNR order in your medical file is beneficial if you are hospitalized. Posting a DNR order near your hospital bed can help avoid confusion in an emergency. Without a DNR order, medical personnel are obligated to make every effort to restore your breathing and heartbeat.
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Do Not Intubate (DNI) order: Similar to a DNR, a DNI order informs medical staff in a hospital or nursing facility that you do not want to be placed on a ventilator (intubated) to assist with breathing.
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Do Not Hospitalize (DNH) order: A DNH order is relevant for individuals in long-term care facilities, such as nursing homes. It indicates to care providers that you prefer not to be transferred to a hospital for treatment, particularly at the end of life.
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Out-of-Hospital DNR order: An out-of-hospital DNR order alerts emergency medical personnel, such as paramedics, to your wishes regarding resuscitation attempts if you are not in a hospital setting.
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Physician Orders for Life-Sustaining Treatment (POLST) and Medical Orders for Life-Sustaining Treatment (MOLST) forms: These forms provide actionable medical orders that healthcare professionals can implement immediately in an emergency. They serve as a medical order that complements your advance directive. POLST or MOLST forms are typically created when you are facing a serious illness, are near the end of life, and understand the specific medical decisions that may need to be made. These forms may also be known as portable medical orders or physician orders for scope of treatment (POST). Check with your state’s department of health to determine if these forms are available in your location.
You may also want to document your wishes regarding organ and tissue donation and brain donation. Furthermore, understanding care options such as palliative care and hospice care can be a valuable part of your advance care planning.
How Can You Get Started with Advance Care Planning?
To begin the process of advance care planning and creating your advanced health care directive, consider these steps:
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Reflect on your values and wishes. Take time to consider what is most important to you in life, especially concerning end-of-life care and medical treatment. This reflection will guide your decisions about future care.
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Talk with your doctor about advance directives. Advance care planning is covered by Medicare as a part of your annual wellness visit. If you have private health insurance, check with your provider regarding coverage. Discussing advance directives with your healthcare provider can help you understand your current health status and the types of medical decisions you might face in the future. For example, you could discuss potential decisions related to complications from conditions like high blood pressure, such as stroke.
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Choose someone you trust to be your health care proxy. Selecting a healthcare proxy is crucial. This could be a family member, a close friend, or your lawyer – anyone you trust to make medical decisions on your behalf if you are unable to. Once you’ve chosen someone, have open conversations with them about your values and preferences. If you’re not yet ready to discuss specific treatments, start with general preferences. You can also use other methods to share your wishes, such as writing a letter or watching informative videos together.
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Complete your advance directive forms. To formalize your healthcare decisions, you can complete a living will. Similarly, once you have chosen your healthcare proxy, you can officially designate them by completing a durable power of attorney for health care.
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Share your forms with your health care proxy, doctors, and loved ones. After completing your advance directives, make copies and store the originals in a secure place. Provide copies to your healthcare proxy, healthcare providers, and your lawyer. Some states have registries where you can store your advance directives for easy access by healthcare providers and your proxy.
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Keep the conversation going. Advance care planning is an ongoing process. Continue to discuss your wishes and review and update your forms at least once a year or after any significant life changes. If you update your forms, keep previous versions on file, noting the date of replacement. If you use a registry, ensure the latest version is recorded.
Remember that everyone’s approach to this process is unique. Be flexible, take it one step at a time, and start small. For instance, begin by simply talking with your loved ones about what you value most in life. Your values, treatment preferences, and even the people involved in your plan may evolve over time. The most important step is to initiate the conversation about what is an advanced health care directive and how it fits into your overall care plan.
How to Find Advance Directive Forms
Establishing your advance directives can often be done at minimal or no cost. Many states provide their own specific forms, which you can access and complete for free. Here are some ways to find free advance directive forms in your state:
- Your doctor’s office or local hospital: Healthcare providers often have advance directive forms and can provide guidance.
- State government websites: Many state health departments or bar associations offer downloadable forms.
- Area Agency on Aging: Local agencies can provide resources and forms specific to your state.
- Online resources (free and reliable): Websites of reputable organizations (listed below) often offer state-specific forms.
If you spend significant time in multiple states, consider preparing advance directives using the forms for each state and keeping copies in each location.
Do you need a lawyer to create advance directives?
Not necessarily. While a lawyer can provide assistance and ensure legal compliance, it is not mandatory to have one to create valid advance directives. However, if you have a lawyer, it is advisable to provide them with a copy of your directive. If you need help with advance care planning, contact your local Area Agency on Aging. Other resources for legal assistance and referrals include state legal aid offices, state bar associations, and local nonprofit agencies, foundations, and social service organizations.
Several organizations offer online platforms where you can create, download, and print your forms. While some may charge fees for these services, remember that numerous free resources are available. Some reputable free online resources include:
When using forms from a website, verify that they are legally recognized in your specific state. Also, ensure the website is secure and protects your personal information. Check for “https” at the beginning of the website address and a lock icon, and review the website’s privacy policy.
Some individuals choose to carry a wallet card indicating they have an advance directive and where it is stored. The American Hospital Association provides an example of such a card (PDF, 40KB).
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For more information about advance directives
Administration for Community Living
202-401-4634
https://www.acl.gov
Department of Veterans Affairs
877-222-8387
www.va.gov/geriatrics
OrganDonor.gov Health Resources & Services Administration
www.organdonor.gov
American Bar Association
800-285-2221
www.americanbar.org
CaringInfo National Hospice and Palliative Care Organization
800-658-8898
[email protected]
www.caringinfo.org
The Conversation Project
866-787-0831
https://theconversationproject.org
National POLST
202-780-8352
[email protected]
www.polst.org
PREPARE for Your Care
[email protected]
https://prepareforyourcare.org
This content is provided by the NIH National Institute on Aging (NIA). NIA scientists and other experts review this content to ensure it is accurate and up to date.
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